TURNED AWAY
After an infant’s death in 1990, Illinois took steps to curtail ambulance diversion. But the oversight system is deeply flawed.
CHICAGO – On a snowy Friday evening in February 1990, Denise Johnson went to check on her newborn daughter, Lenise.
Lenise was still – too still. Panicked, Denise called 911. Within minutes, a Chicago Fire Department rescue squad arrived and determined the infant was in full cardiac arrest.
Paramedics started CPR and called the University of Chicago’s Wyler Children’s Hospital, a highly ranked facility for seriously ill children.
It was just five blocks away. Lenise had been born there.
The paramedics let the emergency room staff know they were coming.
“We’re right down the street from you,” a paramedic said, according to a transcript of that call. “We’re ready to roll down by you guys.”
But the nurse in charge had bad news. The hospital was turning away all ambulances because its intensive care unit was full.
She directed the paramedics to St. Bernard Hospital, just over two miles away. Its emergency room was open, but the hospital was not capable of the specialty care required for serious cases like Lenise’s.
At St. Bernard, emergency room doctors and nurses resuscitated and stabilized Lenise, but the case was too much for that hospital.
The staff soon began calling other hospitals, trying at least eight. All were closed to ambulances.
After four hours, Lenise was carried onto another ambulance, this time headed to Cook County Hospital.
By the time she arrived, it was too late.
Lenise died.
Hospital oversight lags
Lenise Nelson’s death sparked public outrage, political hearings and a federal lawsuit. Lawmakers soon pushed for stronger oversight, and years later the Illinois system would be held up as a model for other states.
But an investigation by the Milwaukee Journal Sentinel, a member of the USA TODAY Network, found the state’s system is deeply flawed, allowing some of Chicago’s top hospitals – including the one that would not treat Lenise – to close their emergency room doors to ambulances for thousands of hours each year.
That’s in violation of what regulators themselves deem “reasonable.”
Last year, Northwestern Memorial Hospital was closed to most incoming ambulance traffic for nearly an entire day 66 times.
Advocate Christ Medical Center in Oak Lawn, south of Chicago, has turned away ambulances for nearly one out of every five days since 2016.
The University of Chicago Medical Center has routinely been closed to ambulances roughly 20% of every month since at least mid-2007.
The Journal Sentinel analysis showed the most common time for hospitals to go on diversion wasn’t weekends, but early in the week – when experts say many beds are set aside for lucrative elective surgeries.
The law says state regulators “shall investigate” every time a hospital goes on bypass. But that isn’t happening, and officials admit oversight has been lax.
In the past five years, they have just once sent warning letters to hospitals. And they have never issued a fine since the law took effect, the Journal Sentinel investigation found.
Ambulance diversion, or “bypass” as it is called in Chicago, is a tactic many hospitals nationwide use when their emergency rooms get too crowded.
The idea is that patients will get care more quickly somewhere else. But emergency rooms on diversion must, under federal law, continue to accept walk-in patients – and that’s typically how 75% of patients arrive.
What’s more, studies have shown the problem typically isn’t caused by the ER. Rather, it stems from issues elsewhere in the hospital – the flow of patients being admitted and discharged.
In 2006, a study by the nonprofit Institute of Medicine – which provides advice on health and medical issues to Congress and the government – concluded diversions can result in “catastrophic delays” in care and called for an end to the practice.
Cities such as Milwaukee and Seattle no longer allow ambulance diversion, except in severe cases. Massachusetts banned it 10 years ago, the only state to do so, and researchers found waiting times in ERs did not skyrocket as many feared.
“Diversion is horrible for patients,” said retired doctor Alan Woodward, one of the architects of the Massachusetts ban. “You create all kinds of complexities that make no sense to avoid doing what you should be doing: taking care of patients.”
When government oversight lags, victims often turn to the courts, where lawsuits and the threat of judgments or settlements can prompt reforms or improvements from businesses and institutions. With ambulance diversion cases, victims almost always find a dead end, and the case of baby Lenise is part of the reason why.
After Lenise’s death, her family sued and a federal appeals court panel found the University of Chicago Medical Center had broken federal law. But hospitals and other groups lobbied the court to take the unusual step of considering the case again.
Just weeks later, the original threejudge panel reversed its own decision. For decades, that about-face ruling has shielded hospitals that turn away ambulances, even if the delay of care caused injury or death.
A city’s attention captured
On Feb. 10, 1990, seven days after Lenise’s death, details of the case appeared in the Chicago Sun-Times. The article included a picture of Denise
Johnson holding a framed photo of her daughter.
“I wanted a little girl and when I finally got one, I lost her,” Johnson said in the article. “I just don’t want this to happen to any other parent. If my baby had gotten to a pediatric intensive care unit immediately, she might have survived.”
Daniel Maglione, a newly minted attorney, saw the photo in the paper and felt bad for the family. Then he got a call from a former client who knew Lenise’s family and asked if Maglione could help.
Soon he was sitting in a living room talking with the parents, both in their 20s. Johnson lived with her grandparents at the time. She couldn’t afford her own place.
The Rev. Jesse Jackson’s Operation PUSH called for inquiries, questioning whether the decision to turn Lenise away was because of her race or her family’s ability to pay, both of which would violate federal law. Lenise was black. Maglione looked into whether there was evidence of that but couldn’t prove that.
“It turned out to be because they were in an ambulance,” he said.
Lenise’s father, Michael Nelson, said he had no idea the hospital would have treated his daughter had he taken her there himself.
“I would have been running there,” he said at the hearing. “To say we’re full and we can’t accept your baby is not right. It’s like saying, ‘Let her die.’ ”
It took five years for Illinois to change its law. The law was beefed up again after a heat wave in Chicago in July 1995 killed 739 people when 18 hospitals in Cook County were on bypass, forcing paramedics to take patients outside the county, delaying care.
No federal agency tracks diversion, so it’s unclear precisely how widespread the tactic is or how often a patient dies. There have been at least 20 deaths nationwide since Lenise’s case, a Journal Sentinel analysis found.
Persistent closures for years
When the Illinois Department of Public Health sent warning letters to four hospitals in the Chicago area in March 2018 about how often they were closed to ambulances, it may have looked like a crackdown.
But the Journal Sentinel analysis found there were plenty of times that regulators could have acted but did not.
How could diversions go on for so long without drawing fire from regulators? The state admitted to the Journal Sentinel it wasn’t even watching.
Prior to 2018, ambulance “bypass had not been as closely monitored,” a state spokeswoman wrote in an email to the paper. Even now, the state reviews hospitals’ bypass hours only four times a year to identify problems, she said.
In response to the letters, the hospitals told state officials they work hard to keep their emergency rooms open to ambulances and outlined plans to ease the overcrowding. The plans included quickly moving less ill patients out of the ER, calling in extra staff and speeding up admissions and discharges.
Most hospitals in Illinois do not turn away ambulances at all.
The Journal Sentinel analysis found that 160 of the roughly 200 hospitals in Illinois haven’t diverted ambulances at all since 2018, or did so less than 1% of the time.
That includes Cook County Health’s Stroger Hospital, the busiest trauma center in Chicago and one of the busiest in the nation. It has gone on diversion only four times for a total of 4.6 hours in the past 12 years.
Stein-Spencer – the state’s top oversight official on the matter, a position she also held when Lenise died in 1990 – doesn’t support ending bypass in Illinois, as Massachusetts did a decade ago.
“I think it is safer for a patient to be transported to a further hospital,” she said. “If we can give a hospital a couple of hours to catch up and move patients around, I think in the long run it is better for the patient.”
But study after study undercuts that view, finding that diversion doesn’t solve the issue of overcrowding and can jeopardize patient safety.
Depending on the hospital, ambulances carrying trauma, stroke and heart attack cases will still be allowed to come.
In addition, under the state guidelines, if it will take more than five minutes to get to the same kind of care, paramedics – if they get the approval of medical authorities at dispatch – can break the hospital’s diversion.
Case fades from memory
While the headlines about Lenise’s death quickly faded, for Maglione the case became a passion.
Maglione was helping Johnson find a place to live, buying the family food and cutting through red tape to get them public assistance.
After the federal lawsuit failed, when the panel reversed itself, the family ended up settling for $125,000.
Denise Johnson’s health declined in the years after her baby’s death. She died after years with chronic lupus in August 2001 at age 34, little more than a decade after she lost her child.
Lenise is buried at Washington Memorial Cemetery in Homewood, an hour south of Chicago’s Loop. It’s next to a cemetery where many of the city’s indigent were buried.
The babies are in front of the cemetery.
Lenise’s plot is hard to find. There is no headstone.